Pediatric cancer: Children and parents fight united

This year more than 10,400 kids under the age of fifteen, 28 every day, will be diagnosed with cancer in the United States. And every day four children die after losing their battle against pediatric cancer.

Up to two of every three kids who survive cancer will face a chronic illness as a result of its treatment. (Photo The Valerie Fund)

Pediatric cancer facts

The causes of childhood cancer are for the most part unknown, not related to lifestyle choices as adult cancers, but the result of changes to the DNA that can happen even before birth.

Children lack specific treatments and receive adult drugs with devastating results to their vulnerable bodies. Indeed the first time the FDA has approved a drug specifically for children’s brain cancer, was only last week.

Treatment efficacy has improved greatly in the last 30 years, since specific chemotherapy regimens started being applied to children.

The overall five-year survival rates have risen to nearly 80 percent. However the treatments used are developed for adults and tend to be older medicines, resulting in serious side effects later in life such as: secondary cancers, heart damage, lung damage, infertility, chronic hepatitis, growth deficit and cognitive impairment.

Up to two of every three kids who survive cancer will face a chronic illnessas a result of its treatment; and 25 percent of survivors will develop a severe or life-threatening condition caused by the cancer treatment.

Parents, who have to witness the terrible ordeal their children go through, claim childhood cancers do not receive enough attention. Insufficient funding is a general complaint, since this research receives only 3 percent of the National Cancer Institute’s (NCI) budget. Parent associations demand targeted therapies, which are now the focus of adult cancer treatment, with a lower toxicity and higher efficiency. They point out the apparent improvement in statistics masks the fact that some 25 percent of children with cancer die within five years of diagnosis; that for some types of childhood cancer survival rates are barely over 50 percent; or that death rate decline is minimal in recent years, reflecting no major advances.

Parents reach out

Overcoming their sadness with tremendous courage, fathers and mothers of children with cancer have been inspired to do great things, with the hope to improve conditions for other children. They strive to create awareness, to raise funds for research, to help families struck by cancer with support, resources and financial aid. These are only a few of countless wonderful initiatives:

Alex’s Lemonade Stand has raised more than $55 million and funded more than 250 research projects since 2000. It started with Alexandra Scott’s desire to raise money for doctor’s research and, before she passed away at the age of eight, her initiative summed over $1 million. Continued by her parents, their aim is to empower children to get involved and make a difference with a simple lemonade stand.

American Childhood Cancer Association (ACCO) was created in 1970 by a group of parents whose children had been diagnosed with cancer. It has grown to become the largest grassroots childhood cancer organization in the U.S. with 40 local affiliates nationwide, and is the largest publisher of free cancer childhood books in the country.

Children’s Cancer Association (CCA) has put together the Kid´s Cancer Pages directory, recognized as the most comprehensive guide for parents by the NCI. It includes information on medical treatments, pain management, financial aid, healthcare assistance, as well as overall guidance. CCA was established in memory of Alexandra Ellis, by her parents, upon her death in 1995.

Cookies for Kid’s Cancer started as a giant bake sale to raise money for research by young Liam Witt’s mother, while he was being treated for neuroblastoma. It was a success from the start with over $400,000 raised in the event and has kept growing since. Anybody can contribute by buying their cookies, their cookbook or holding a bake sale and donating the proceeds.

Special Love started in 1983 with the aim of offering children with cancer the opportunity to enjoy camp activities with others in their same situation. This has expanded to over 20 year-round programs, with special siblings’ and parents’ retreats. It was founded by Tom and Sheila Baker, who lost a daughter to lymphoma.

The Icla da Silva Foundation, named after agirl who never found a matching donor and died of leukemia in 1992, is dedicated to recruiting bone marrow donors. With offices along the East Coast and Puerto Rico, the Foundation is the largest recruitment center for the Be the Match Registry in the United States.

The Valerie Fund started in 1976 with the idea of building regional comprehensive care facilities so children with cancer wouldn’t have to travel long distances for treatment. This initiative, dedicated by Ed and Sue Goldstein to their daughter Valerie, has grown to seven centers in New York, New Jersey and Philadelphia, creating one of the largest networks for children with cancer in the country.

These and other resources related to childhood cancer can be found clicking here.